Denial Is My Spiritual Practice: (And Other Failures of Faith)

By Rachel G. Hackenberg and Martha Spong

Two ministers share their own stories about struggling to live out their faith.

It’s the sort of experience familiar to many: Somewhere between illness and divorce, abusive relationships and brushes with death, faith failed to provide answers . . . or we failed to live as though we believed faith held answers. But surely, it’s different for clergy, the ones who preach and practice faith? But faith requires more, and authors Martha Spong and Rachel G. Hackenberg, who grew up in the church and became ordained ministers, know first-hand about coming to terms with God and life, the need to search for answers . . . or at least assurance we are not alone in struggling for renewed hope. Denial is My Spiritual Practice is a companion for the wondering and struggling. The authors offer their own stories as evidence that God remains, both when faith fails and when faith finds new understanding. They combine stark life experiences, offbeat spiritual perspectives, and Scripture to offer comfort, grace, laughter, and a few tears along the way.

• Language: English
• Publisher: Church Publishing
• Release date: May 15, 2018
• ISBN: 9781640650244

Rachel G. Hackenberg

RACHEL G. HACKENBERG is author of Writing to God: 40 Days of Praying with My Pen, Writing to God: Kids' Edition, and Sacred Pause: A Creative Retreat for the Word-Weary Christian, as well as several chapters on preaching and ministry. She contributes to RevGalBlogPals and The Huffington Post. An ordained United Church of Christ minister, Hackenberg and her family reside in Cleveland, Ohio.

Book preview

1 • OUT-OF-BODY EXPERIENCES

Denial Is My Spiritual Practice

Martha

Isat at my Baptist grandmother’s Formica-topped kitchen table and watched her send carrots down the chute of her juice machine. Long slivers became bright orange juice in a glass. I asked to taste it. My four-year-old taste buds expected something sweet like the Tang the astronauts drank, with the velvety texture of the V-8 we bought in a big can. Instead it tasted like earth and went down like eraser crumbs. I did not ask to taste it again, but I did ask my mother why Grandma drank that awful-tasting stuff. I was a grown-up before I got the full answer. My grandmother was on a quest to improve her health, for reasons not merely medical but metaphysical. Her diet did not require carrot juice; rather, it excluded other things she liked. She viewed her ongoing gallbladder troubles as a warning from God. Her charismatic fervor for the juice machine matched her spiritual enthusiasm to figure out what God wanted from her and to offer it with all the energy she could muster.

The subtext of her efforts influenced my mother and, therefore, me. By generational osmosis I learned that ill health was explained by either blame or guilt—someone gave me a sickness through their sinful carelessness, or I caused it by my own sinful neglect of God’s temple, my body. These theological understandings inclined us to a shamed silence about illness. Surely this prayerful woman knew more than we did. My grandmother left those she influenced with the impression that God’s approval could be lost and won based on our own actions. I’m not claiming she disbelieved grace. I think she viewed her efforts as a significant supplement, just like the juice.

In my childhood, a polite silence about chronic health problems prevailed. Today, we live in the era of pharmaceutical advertisements promising to abate the symptoms of chronic illnesses. Happy people pack suitcases or fold laundry despite their rheumatoid arthritis (RA), play with their grandchildren thanks to help for their diabetic nerve pain, attend carnivals unafraid of their irritable bowel syndrome, and participate in outdoor activities even though they have lung cancer. Today, I see these short stories through the lens of my life with RA. In one television ad, a young woman sadly admires a pair of red high heels in a shop window, the implication being that she cannot wear those shoes due to her disease; RA can inflame or damage the little joints in our feet. Later, she leaves the store wearing the shoes, her life changed by an injectable biologic medication. These images treat chronic conditions as something curable, when the truth is that living with a chronic illness requires, for most patients, a lifelong commitment to self-care that does not always succeed at combatting the illness or its symptoms.

Growing up under my grandmother’s influence left a mark, despite the contrary views I gained through my life experience, theological education, and spiritual discernment. In the back of my mind, in the depths of my heart, in the deepest recesses of my gut lingers a primal fear that I have done or am doing something wrong: a shame about being ill. A shame-based understanding of illness, or of any other bad things that happen in our lives, is fueled by the overriding narrative of popular Christian churches and groups based in the prosperity mindset. If we do things right, God will reward us. If we are suffering, God must be testing, or worse, punishing us.

My first symptom was a sore shoulder that wouldn’t get better. I blamed it on shoveling the late February snow. My doctor sent me to a chiropractor, who rearranged me, gave me exercises, and then finally released me, saying he thought we had helped the shoulder, but there was still something; he just wasn’t sure what. I remember he touched my hand and my wrist as he said it. I brushed it off. I believed I would get better.

A few weeks later, while attending a conference, I found I couldn’t knit. My hands were sore, stiff, even swollen. My colleagues noticed the yarn and the needles sitting in my lap. My feet looked fat—well, fatter than usual—in my sandals. Shortly after returning home, I woke in the middle of the night and could not bend my fingers. The next morning, I had to call my twelve-year-old daughter to open the bedroom door because I could not turn the handle. That night my knee felt as though someone had driven a sword into it.

I called my primary care doctor again and began a journey through the medical system: back to her office, then down the hall to sports medicine for a check on my knees, out of that office to a physical therapist—the one who finally saw the symptoms and heard the history that made rheumatoid arthritis the most likely diagnosis. His mom had it, and he saw how the pieces went together. He sent me back to sports medicine, where the doctor spent more time telling me how sad her colleague in primary care was than she did asking how I felt. I’m a pastor, so I pastored her. There was no room for my feelings.

I’m not advising going to Dr. Google for advice, but when you look up RA (which some patient activists would rather we called rheumatoid disease), the first thing you see are the pictures of deformed joints. I wish I could say my concern was functional— could I knit? Hold a pencil? Fix dinner if the joints in my fingers went sideways?—but the truth is I didn’t want my hands or feet to look like the pictures on the internet. My then-husband was away for an extended period when I got the news, but returned in time to go with me to meet the rheumatologist. I remember trying to explain why it mattered, when it seemed obvious to me that anyone hearing important information from an unfamiliar specialist ought to have a support person along. Why did that seem so mysterious? You find out in these moments what kind of person you’re letting in close, who actually cares, and who only wants to be with you in good times. I remember sitting in a restaurant, crying, admitting my fear that I might not be able to do all the things everyone expected me to do and the things I loved to do.

I don’t want to be all taking and no giving, I said, in an odd quote of 9 to 5.

I heard the reassuring answer, You have given a lot, it’s okay, but he would soon speak his truth: I want to be a lover, not a nurse.

You find out who really cares about you when you are ill. A good friend became my best friend when she researched the illness and told me things I didn’t know yet myself. An acquaintance living with RA became a dear friend and shared the Scripture that kept her going:

Strengthen the weak hands,

and make firm the feeble knees.

Say to those who are of a fearful heart,

"Be strong, do not fear!

Here is your God.

He will come with vengeance,

with terrible recompense.

He will come and save you."¹

I wasn’t exactly looking for vengeance, however. It was no one else’s fault. There was no target for God’s terrible recompense. That might have made it easier. The literature written for RA patients, who are mostly women, tended to be accusatory and was less than helpful. Your joint fluid is attacking your joints, which seemed to mean, Why are you hitting yourself, lady? Instead, I hung onto the things my new rheumatologist told me, writing them down at home on Post-It notes and typing them into documents. The keys to living as well as possible with RA were:

•

rest;

•

exercise;

•

medication;

•

a positive attitude.

My body demanded rest. I am a type-A patient, so I took the medications. Exercise was harder—you’re not supposed to overuse the joints that are inflamed. But the hardest thing of all was the attitude. While it is true that there are new medications, and there is a much lower likelihood of joint damage and deformities now, it’s also true that the medications come with their own complexities because they suppress the immune system and make patients susceptible to infections, complicating recovery. Patients also face a higher risk of lymphoma, heart disease, and a depressing list of other complications, yet we are told we need to cultivate a positive attitude. Well. It’s all fine when the medicine is working. When it stops working, the medical professionals describe it as the patient’s failure, as in, You’ve failed Enbrel. When another illness arises, you have to stop taking the RA medication; you get better from a cold or sinus infection while your RA gets worse. It can be hard to cultivate a positive attitude.

Denial is easier.

So I pretend I’m okay.

And I pretend, to myself, that I’m okay with it because I don’t want to be one of those noble women who were bedridden or could not leave the house or were blind from birth, yet wrote the poems we find inspiring or the hymns we call classics. It’s my worst nightmare. The times I have to stay in bed are also the times when I don’t feel well enough to do much of anything useful, so I stream Netflix on my iPad. It does not cheer me up, as I usually conclude the world is a terrible place run by amoral villains like those on Scandal, or I am a terrible person for being in bed with the polygamous Mormons of Big Love.

If I felt good enough to write, it might help, as it has helped in so many other ways: making sense of things, providing a place to vent, or creating something beautiful that I think might help not just me but someone else, too. Most of my adult life, my spiritual practices have been grounded in words on paper—through journaling, making lists of people who need intercessory prayer, writing poem-prayers, studying in order to write liturgy, and preparing to preach. I’m not drawn to more bodily practices. Yoga left me weeping, unable to contain the sadness I felt about my circumstances. You won’t find me sitting on a prayer mat breathing, centering, and creating silence and space for God to do any talking to me. It scares me.

In my higher mind I believe that my grandmother was wrong, that God doesn’t single us out for particular punishments to teach us certain spiritual lessons, but somewhere in my little Baptist girl heart lingered a fear that I did something wrong. I wasn’t working hard enough or following faithfully enough. It’s hard to imagine anyone else passing that harsh a judgment on my life, although I clearly exhibited atrocious taste in a partner at the time of my diagnosis. Otherwise, an examination of my life would have shown a woman in her forties working hard as a pastor and a mom, in the midst of an effort to get in shape that showed results in lost pounds and added strength. Things were going well for me, until suddenly they were not.

Why me? Why now? I wondered as I sat on the couch, hoping the medications would reduce the pain, the swelling, and the stiffness, and that I would once again be able to hold a pencil, or knitting needles, or a paring knife.

In the six months after the illness first flared, I suffered from prednisone-induced insomnia. I began to murmur the Serenity Prayer in the middle of the night. My twelve-step experience was limited to a few visits to Overeaters Anonymous, so I struggled to get the words right, but once I had them, I said the prayer again and again.

God grant me the serenity

to accept the things I cannot change; courage

to change the things I can;

and wisdom to know the difference.

My new mantra assuaged some of the desperation. By fall, the medicine was working, and the steroids had been withdrawn. I felt better. Aside from being sure to take the right pills on the right day, I felt (sort of) normal. I felt more comfortable putting aside the worries about my future health. When I listened to the parishioner who told me how her husband gave her RA injections, I separated myself from her problems. That would not be me, could not be me. My reflective and dependent period ended, and I went back to all giving and no taking, doing for others so they wouldn’t have to do anything for me.

The world supports denial. RA is an invisible illness, unless you reach the point where your joints are obviously deformed. A person has to know me pretty well, or be wise to the way rheumatoid disease presents, to catch on when I am not at my best. And I find when I let my discouragement show, I not only disappoint myself, but I also leave myself open to the unwelcome opinions of others—the people who can’t see the illness, so they don’t believe in it. I remember the winter day I was lying in bed with the kind of cold-bordering-on-pneumonia familiar to anyone who takes immune-suppressing medications. I scrolled Twitter on my iPhone, looking for news updates about the people occupying a wildlife refuge in Oregon. When I posted one of the stories on Facebook, a neighbor asked why I was wasting my time on the story. When I mentioned I was sick in bed and trying to amuse myself, instead of offering sympathy, she advised me to stop complaining.

Is it complaining to say how things really are? I remembered a long-ago Christmas, the first time I had seen most of my extended family since losing a baby midway through a pregnancy. My brother and his wife were coming with their infant son, a few weeks older than my son would have been, and I prepared myself for what I knew would be a hard visit. My aunt was coming to dinner on Christmas Day, an aunt who had lost a baby due to a tragic accident at birth. Even if no one else understood how I felt, she would. There would be an ally at the table. When she asked how I was, I told her. She shut me down.

Don’t you know that no one really wants to hear the answer to that question?

Twenty-five years later, I continue to censor myself, to wonder if anyone else really wants to know how I am feeling, emotionally or physically. How